Over the past 10 years, Parkinson’s UK has seen a shift towards researchers working in partnership with people affected by health conditions such as Parkinson’s, rather than doing research to or on them.
This partnership can help at all stages of research – in the planning, design, management, evaluation and dissemination of findings.
Parkinson’s UK has developed a resource to support researchers to involve people affected by Parkinsons which includes:
- what is Patient and Public Involvement?
- methods of involvement, in both clinical and basic research
- how Parkinson’s UK can support involvement in research
- case study examples
- ensuring PPI is meaningful
“Research into health conditions can only move forward with interaction from those affected by the condition. This interaction is not limited to simply taking part. Involvement requires a two-way communication with researchers. This is essential to produce the best research possible.
As one of the first resources of its kind, we’re really proud of it. We hope it will be shared with many research communities, and that other organisations will find it useful to develop their own guidance.”
- Isabelle Abbey-Vital, Research Involvement Officer at Parkinson’s UK